The majority of Promoting Excellence in End-of-Life
Caregrantees (demonstration projects) and national workgroups have
finished the term of their Promoting
Excellence projects. Each grantee and workgroup developed a number
of innovative palliative care tools that we are making available
to clinicians and researchers
via
this Web site. Clicking on the title of a tool will bring you to a
cover sheet that provides detailed information about the tool including
a description, contact information and sources.

As noted on their respective cover sheets, many of the tools are
available for downloading from this Web site, others may be
obtained from other sites and some tools are unavailable at this time.

Baystate Medical Center
As one aspect of their project to integrate palliative care concepts
into the care of end-stage renal patients, Baystate Medical Center
introduced
mortality review conferences into the renal dialysis setting. They developed
a tool for assessing how well end-of-life care issues were addressed
for renal patients, and discussion of this "assessment" is
central to the mortality conference. They also developed an instrument
for advance care planning for these patients and a questionnaire for
assessing the family's perception of care.

Bristol Bay Area Health Corporation
The Helping Hands Project focused on making palliative and end-of-life
care available to native Alaskans in 32 remote villages, reducing the
need to relocate seriously ill patients during their final days.
They trained existing medical personnel in palliative care and created
a network of care that included village volunteers.
In addition, they created training manuals for health care personnel, families
and volunteers and culturally appropriate program materials.

SSM Cardinal Glennon Children's Hospital
The Footprints Project offers case managed palliative care for children
with life threatening illness while in the hospital and at home. Project
staff developed pediatric palliative care planning tools and clinical
training modules. They also developed tools to assess clinician
attitudes and needs, family satisfaction with care and the impact
of an interdisciplinary palliative care on grief.

Children's Hospital and Regional Medical
Center
The Pediatric Palliative Care Project unites a tertiary care children's
hospital, hospice and insurers to address the needs of children with life
threatening illnesses using a co-case management model. The project team
developed a decision making/care planning tool, with an accompanying tutorial,
as well as other clinical tools for pediatric
palliative care. The project's insurance partners developed frameworks
for flexible benefit plans for pediatric palliative care. The project
assessed patient quality of life, family satisfaction with care and
clinician attitudes and knowledge.

Comprehensive Cancer Center, University
of Michigan
In collaboration with Hospice of Michigan, this grantee designed a
care system that offers patients with cancer, congestive heart failure
or COPD access to hospice services earlier in the course of illness.
In an experimental design that includes a control group, they are evaluating
the impact of this "simultaneous
care" model on symptom management, quality of life and patient/family
satisfaction.

Cooper Green Hospital
This grantee served terminally ill patients in an inpatient setting
and in collaboration with a local home hospice. They assessed patient
and family satisfaction with care. In addition, they collected data
on symptom management and quality of life.
Another focus of the project was training of medical residents. These trainees
were asked to complete a survey that evaluates their comfort with and confidence
in providing care to patients at the end of life.

Dartmouth-Hitchcock Medical Center, Norris
Cotton Cancer Center
In this project, "palliative care coordinators" helped to
identify patients who would benefit from hospice or other home-based
services in
addition to their care at the Cancer Center. In particular, the project
sought to coordinate care between the cancer center and local providers
for patients in three different areas of Vermont and New Hampshire. In
an experimental design that included a control group, they evaluated
symptom management
and quality of life for patients as well as perception of care and family
satisfaction.

Department of Veterans Affairs, West Los
Angeles Medical Center
With the focus on improving end-of-life care for veterans, measures for
this project included symptom assessment/management, quality of life assessment
and outcomes, and spiritual care needs and outcomes. The project also sought
to improve advance care planning for veterans and they tracked conversations
regarding treatment preferences. This grantee also evaluated patient
and family satisfaction with care, and conducted chart reviews to assess
care coordination.

End-Stage Renal Disease (ESRD)
Workgroup
The ESRD Workgroup
worked to improve supportive care and quality of life for dialysis
patients from Spring 2000 - Spring 2002. Chaired by Alvin Moss, MD (Director
of the West Virginia University Center for Health Ethics and Law), this
workgroup consisted of 23 members including nurses, social workers, nephrologists,
and kidney transplant recipients. To accomplish its goals, the workgroup
divided into three subgroups -- Education, Quality of Life, and Quality
of Dying.

Henry Ford Health System
This project focused on educating clinicians, patients and families about
palliative care and creating a system-wide approach to advance directives.
Team members created an educational series designed for busy practicing
clinicians. For patients, an integrated booklet and video on advance
care planning was developed. An interactive CD that comprehensively addresses
questions of those facing serious illness was also produced.

Ireland
Cancer Center: University Hospitals & Case
Western Reserve University
The "Safe Conduct" team included hospice and cancer center
professionals working together to provide palliative care along with curative
cancer treatments. The team helped craft care plans that addressed the
patients' changing
needs as the disease progressed. The grantee evaluated pain and symptom
management, patient quality of life and family perception of care following
the patient's death.

Louisiana State University Medical Center
Combining palliative care and aggressive treatment for HIV management,
this grantees' aim included better symptom management, fewer clinic
visits, improved quality of life and higher patient satisfaction. They
evaluated impact of the project on all of these goals primarily
through focus groups at the participating clinic and at a comparison
site. They also collected data from patients during regularly scheduled
clinic visits.

Massachusetts Department of Mental Health
This grantee implemented and tested a process for integrating advance
care planning into mental health care. They developed a unique interview
instrument for determining patient capacity to make advance care planning
decisions and for eliciting patient preferences for end-of-life care.

Medical University of South Carolina
Working in the Enterprise Community in Charleston, this grantee conducted
focus groups and interviews with providers and community members, some
of whom have had recent experiences with terminal illness. They used
the information to craft interventions to improve the quality of end-of-life
care for the local population, and shared their findings with other
similar communities in order to facilitate care improvements.

Mount Sinai School of Medicine
Working with a national managed care provider, this grantee introduced
palliative care assessment into the care planning for seriously ill patients
in the community setting. They evaluated the impact of this added
assessment information on the care and outcomes that patients experience.

PhoenixCare with Hospice of the Valley
PhoenixCare developed a model that offers hospice-like care to patients
with advanced illness not yet ready for hospice. Palliative care
was offered simultaneously with cure-oriented care. The project created
a partnership between a hospice and managed care companies. The project
team developed care management tools and a series of educational
materials for patients and families.

Sutter VNA and Hospice
Working with managed care, capitated, high-risk patients, this group
designed care models that are cost effective while providing state of
the art palliative care for terminal patients. They developed a
unique evaluation instrument that assesses the impact of the CHOICES
project on several aspects of care.

Within the cancer center, they integrated elements of palliative
care into treatment plans early in the course illness.

In rural areas
of Northern
California, they created supportive networks for local hospices
that included medical center and cancer center resources.

Additionally,
they
established a hospice in a women's prison setting.

Their
evaluation plan was slightly different for each setting, drawing
on different measures
for advance care planning activity, pain and symptom management,
patient quality of life, and family satisfaction with care. For
their work in
the rural settings, they also developed instruments to assess
professional educational needs and local provider resources.

University of California, San Francisco
The Comprehensive Care Team project was a social worker case manager
model that offered patients palliative care simultaneously with aggressive
curative treatment. The interdisciplinary approach included patient
advocates, art therapists and caregiver support. The project assessed
clinician comfort with discussion of spiritual issues with patients
and patient/family satisfaction with care.

University of Chicago Medical Center
Working with Hospice of Michigan, this grantee developed a new model
for delivering palliative care to patients with Alzheimer's disease
and other forms of dementia. Because of the challenges in evaluating
care of these patients, they have developed an innovative interview
that gathers data about symptom management and quality of care.

University of New Mexico, Health Sciences
Center
To encourage increased use of palliative care in rural New Mexico, this
grantee created a network among local hospices in seven communities.
They also developed a resource center at the University that provided educational
curricula and state of the art palliative care consultation. The project
staff conducted in depth studies of several of the rural
communities and they developed focus group and survey instruments for
that process. Their evaluation focused on measuring the activity and
usefulness of the network and resource center. They also used a unique
organizational assessment tool to help local hospices identify strengths
and weaknesses.

University of Pennsylvania, School of
Nursing
This grantee evaluated different techniques for improving care for
dying patients in nursing homes. With the goal of integrating palliative
care into the fabric of long term care, they developed education for
nursing home staff. In selected homes, they also created palliative
care teams that review patient care plans regularly. The evaluation was
designed to compare the impact of education alone versus education plus
the palliative care team on various measures of excellent end-of-life care.
These include advance care planning, pain management, psychosocial and
psychospiritual outcomes and family satisfaction. They also assessed
cost and utilization outcomes.

Volunteers of America, Inc
This grantee addressed end-of-life care in prisons. They introduced
hospice care into three institutions and worked with them and the National
Hospice and Palliative Care Organization to develop national standards
for prison hospices. Their evaluation will be largely qualitative, and
will seek to describe the development process for each of the three prison
hospices.

Promoting Excellence in End-of-Life Care was a
national program of the Robert Wood Johnson Foundation dedicated to long-term
changes in health care
institutions to substantially improve care for dying people and their
families.